*Written May 22, 2006*
Well these past two months ALOT of stuff has happened in my little man's life!!
In March we saw the neurologist. Still no answers have been found, however she said she wanted to do a muscle biopsy to test for more specific neuromuscular disorders he may have that may give us answers, disorders that are linked to kids that have global developmental delay like Ricky has, as well as severe speach delay/disorder, and his chorea movements, as well as his hypotonia (low muscle tone). So I agree to have this done... and it was done May 8, 2006 (not a fun proceedure but will go into more detail a bit farther down...
Also in March we saw the ENT and he finally put Ricky down on priority for tubes and his tongue being clipped. Amazingly enough this was done APRIL 7th!! It went ok, but his reaction to the anethesia was not good. Plus the extra loundness (thanks to no more ear infections or fluid), he did not nap for a few days and his balance was off for about a week! But then he was fine :)
GREAT NEWS - RICKY STARTED WALKING INDEPENDANTLY MARCH 25th, 2006!
It took him a few more weeks to get it down pat, and he is still mastering it but he is doing great! No more walker!! Now to just get him to work on going up and down stairs! Going up is improving but going down is a not... even going up he needs ALOT of assistance still but its commign along! :)
In May we saw the Genetics doctor just days before the biopsy procedure was done. She suggested they also do a SPINAL TAP which at first made me freak out and cry in the office, but later realized it was for the best and may as well do all the tests I can now for him. She also feels it will be a neuromuscular disorder he ends up having, possibly in the mitocondrial disorder family, but can not say for sure.....
So May 8th was the big day for the spinal tap and biopsy, again anethesia did a number on him but he got back to himself again by the 2nd day. The scar is a little big but not huge, just noticeable. He had a nerve taken out to biopsy too so he will be numb in that area for his whole life but its a small area and not one you really care about.. just behind the lower calf in the left leg.
My little man turned TWO YEARS OLD on May 13th!! We had alittle family party but nothing major, but he liked his cake and special attention just the same :)
THERAPY NEWS...
Ricky is now at a 12 month level in gross motor and 12-18 months in fine motor development, for speach he is expressively at 9months (still not talking, only making sounds and some babbling and MAMA, BY-BYE, and BA-BA), in receptive language he is at 9-18 months. So his delays are all over the board. It will mean he will remain in therapies for quite some time yet. At the moment he gets weekly in-home stimulation (gross and fine motor therapy), and monthly physio and occupational and speach therapy. I am hoping that by the fall it will be weekly for all therapies when he gets into a special preschool and into a specialized rehabilitation center. What a busy life! LOL... but he is worth it! :)
That's all for now, will update again as time allows, hopefully at least every other month.. his babiesonline page is updated regularly.
Ricky's Babiesonline Page
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